sharing Rhett's heart with the world

Rhett will be turning 6 months old in less than two weeks! It’s hard to believe how fast time has flown by since bringing him home. Now that we have gotten the tube removed he has just been the happiest little kid. It doesn’t even really feel like anything is wrong most of the time and for the most part he just acts like a normal baby… well a normal baby who takes multiple medicines throughout the day and has a scar on his chest. Watching him grow and learn has been one of the most rewarding experiences of my life. I can’t wait to experience all of the things to come over the next few months. We are still working on getting him to sit up on his own, but he has gotten much stronger at holding his head up.

He has no idea that his little life has been so different than a normal kid. I hope that when he truly grasps the idea someday of what he has been through that he will wear his scar as a badge of courage and strength. I’m not sure how to explain it all to him one day, but I can’t wait to tell him about all of the amazing feats that he has accomplished and about all of the love that he has around him. I have dreams that he will someday become a heart surgeon and save lives like Dr. Tam has done for him. Having the experience that he will have had would be an amazing dynamic for any parent that will have to walk the same road that we have.

Speaking of other parents, Amanda was nominated to be a member of the MAIN Family Advisory Council! We asked staff to nominate parents who they feel have handled their child’s treatment effectively, are well-spoken, a good advocate for their child, can see beyond their own experiences, and listen and respect other perspectives. Congratulations on being selected as a parent candidate; this is a great honor! The Family Advisory Councils are made up of parents and staff that look at ways to improve family experience at Cook Children’s and give input, from a families perspective, on policies and procedures. I couldn’t be more proud of her and I’m happy to say that she has accepted the nomination and is currently training to be a Cooks volunteer. I think she will do an amazing job and I know she has become very passionate about giving back and helping other families.

After Rhett’s appointment with Dr. Roten the other day we “casually” ran into another couple who’s son has been in the hospital for a few months after his first surgery. They were finally getting to go home and they were going to be venturing out with a feeding tube. Apparently Rhett was one of the first few babies who was actually able to go home with an NG tube, which we didn’t really know. The doctors have asked a lot of feedback on our experiences and anything they could help with for future parents of NG kids. We sat and talked with them for 30-45 minutes and watching Amanda explain everything made smile. She is so calm and positive even when explaining the pains that went along with it, but what we always try to include is that it will get better. We don’t sugar coat it either. The first part sucks, but it DOES get better. I know she is going to be so good at her new volunteer position at Cooks.

Rhett is growing slowly but surely. He’s just under 13 lbs now which puts him squarely in the 1% of weight for babies his age. Hopefully he’ll continue to grow and get stronger as time goes on now that he is eating everything he needs from his bottle. We have even begun to feed him baby food! So far he has pretty much liked all of them, but who could blame him? Have you ever smelled formula? It smells like cardboard and old socks that sat in the washing machine over night. Blegh!

Talon is absolutely infatuated with his little brother and loves to make him laugh. Amanda and I can already see the special bond the two of them have and our favorite thing is the way Rhett laughs at Talon. It’s a different laugh than when he laughs at anyone else. I know Talon will set a great example and be protective of his little brother. I’ve said it before, but watching them grow up together will just be so great. Talon starts T-Ball this Monday and we’ve had practices and all of that and it’s been nice to have something other than work and come home to do. I was talking to Amanda the other day and explaining to her that it felt like real life was beginning. I always dreamed of having a family and kids, but the baby baby stuff is for the birds… Let’s play ball! I’ve really enjoyed getting to help with practice and Talon seems to really like playing baseball! I’m sure as soon as Rhett is able he’ll be so excited to get to play catch with his big bro.

I’m thinking about doing a section the website for parents who are finding out that they have a heart kid. Somewhere to have specific posts about things like the NG tube, sleeping arrangements, what to bring to the hospital, things like that. I know Amanda and I just feel a calling to help others who are going through this and I think it could be a good place to get a parents perspective. Maybe even a place where people could send us an email if they have questions or just want to vent. I know we would have appreciated somewhere to go like that.

We only have a few of the Team Rhett shirts left. I think we are going to do a new design before Rhett’s 3 year old surgery, so we won’t be ordering any more of these. We have some in all of the sizes except 2XL if anyone is interested.

Rhett has really been excelling since coming home after the Glenn. He definitely suffered through the Glenn headaches but it seems to have subsided over the last week or so. He has really improved his eating and it was a pretty special moment that Amanda and I shared the night before the appointment when Rhett drank all 85ml of his bottle. Watching her mom is one of my favorite hobbies. One moment she will show pure determination and the next she will switch to complete nurture mode to make sure he and Talon are okay. She’s the bee’s knee’s.

Our first appointment was with Chick Fil A. Haha, kidding. (but we did eat at CFA breakfast at the hospital). Our first appointment was with Dr. Roten. Before meeting with her the tech’s checked all of Rhett’s vitals and did an EKG, to which were very happy with the results:

11lbs .5 ounces

Blood Pressure 110/69

24″ Tall

and a big ol’ 90% on his oxygen saturation!!!

They took us back for an echo and then escorted us to go get an xray and then back to the room to wait for Dr. Roten. When she came in she said she was very pleased with what she saw on the EKG, echo and xray, so that was good news. She said that his heart is performing well, but that she is still hoping for it to work a little bit better. But hopefully that all comes with him growing and just getting stronger in general.

Next we talked about his eating. She said that as long as we can get him to eat between 550ml and 600ml a day that he could come off of the tube. Obviously that is exciting, but he still hasn’t quite managed to just completely kick butt on eating. He’s really doing well and we are pleased with the progress, but for now we are going to leave the tube in until he actually does eat 550ml during the day. We have moved up from 85ml per feeding to 100ml per feeding and Dr. Roten said we can start introducing rice cereal!

It’s funny because when all of this was happening all we were thinking about was that first surgery. We didn’t even really process that Rhett is going to grow up and do things! We are pretty sure he has been teething because he’s been munching on his hands, he laughs and smiles, and now he is going to be eating from a spoon! Every small milestone feels like we’ve climbed to the top of the mountain and we are over the moon excited about the progress he has been making.

After meeting with Dr. Roten, Crystal from Dr. Tam’s office came in and checked on Rhett’s incision and said it was looking great! We left there and went and picked up Raisin’ Canes chicken to have a late lunch with our friends from Team Dax. It’s always great catching up with them and we are so thankful to have someone who we can be close to who understands everything that we are going through. I think we have all been able to be each others voice of reason as we all tackle this together. Dax is doing really good too! He had his Glenn last week and was already up on P3 to recover.

We are finally finding a new normal and he has started sleeping in the co-sleeper next to our bed. 4 months Amanda and I went without sleeping in a bed together and it has been so nice to get to share our bed again. Talon is finally starting to get used to being home I think too. He’s done really good about staying in his room for most of the night, even though is crazy and still stays up way too late. It’s hard on him I think to have to go to bed when he knows we are still in the living room with Rhett since his last feeding before we go to bed is at 10:00.

I’ve been having to work really late over the past few weeks and Amanda has been really doing amazing and keeping the family and house in order until I can finally get home. I’m hoping that things will slow down here soon so I can leave on time and spend time with the family.

Next appointment is with Dr. Roten on March 21st!

ECI (Early Childhood Intervention) is coming out to hour house on February 16th to check on how Rhett is developing, so I’ll post an update after their visit. Rhett is still a little slow on holding up his head, but he seems to get better and better every day. Ready for him to be big and strong!!

Amanda and I finally made it to bed at 1:30 Sunday night and we had to be up at 4:45 to get ready to take Rhett to the hospital for his Glenn surgery. Amanda had to get ready and I had to load the car but we also had to give Rhett a bath before we left. So in the car we were and we headed into Cook’s and actually arrived EARLY! Anyone who knows Amanda and I know how much of a feat this was. We checked in and they did all of Rhett’s vitals again and had us sign some paperwork.

At around 9:00am they we took Rhett back to surgery and sent him away with the people who would help in the next step of saving his life. We knew he was in great hands, but obviously it was a very tough moment. We walked back to the CICU waiting room to be with our many family members who showed up. We went and had breakfast while they were getting Rhett ready for surgery and then went back to the room for a bit and they gave us a call at 11:21am that the first incision had been made and they were ready to start. The waiting now began…

We hung out for a bit and tried to lighten the mood with some Uno (Amanda and I have been hooked lately). Around noon we went down to the Camelot Court with about half of our crew and had lunch. FYI if you have a party of 12, noon is a terrible time to try to find a table. We received another call while at lunch that everything was going great and they were getting ready to put him on bypass while Dr. Tam did his miracle work.

So back upstairs we went to wait longer and we all just hung out and tried to pass the time. We received the final call at 2:10 that Rhett was finished with surgery and that everything went according to plan! They told us to go to the other waiting room so we could see Rhett get wheeled past on his way to the CICU. It felt like hours we were standing in the hall waiting to see our boy come through, while our family waited behind 8 small glass squares to catch a glimpse as well.

After they wheeled him past our family went to back to the other waiting room and all that was left in the room was another family. Amanda and I stayed behind and sat down to talk with them. Their son was about to go into his Norwood surgery with Dr. Tam and we could see the fear on their faces that we recognized as if we were looking into a mirror three long months ago. We wanted to give them some guidance that we hoped they wanted and we talked for about 10 minutes describing how our initial visit to Cook’s went. We showed them pictures of Rhett immediately following surgery to give them an idea of what to expect and gave them the website and facebook page to go back and look at all that had transpired over our 33 days in the hospital with Rhett. I totally facebook stalked when we got back and saw that the momma had liked Rhett’s page and I sent her a friend request hoping that they wouldn’t take it weirdly. We knew we’d see them around and I knew how nice it was to see a friendly face of someone who has been through the journey before.

We were finally able to go back and see Rhett about 45 minutes later. He wasn’t nearly as swollen as he had been the first time and that was a very appreciated sight. He looked so much better, but he still was hooked up to countless wires and tubes and our little boy who had gone to bed smiling was laying there in what was obvious discomfort and pain even through all of the medicine that was being provided. It’s pretty safe to say that it never gets easier to see. We paraded our family in and out and they all agreed that this time he looked much better, but now the battle was really beginning.

He was bleeding a little more than they had hoped out of his chest tube, so getting that to slow down was goal number one. They gave him some medicine to help with all of that and over the next few hours it made a big difference. They had told us originally that they had hoped to take him off of the ventilator that evening, but it just wasn’t in the cards. He was still having trouble breathing on his own, but he was stable and that’s what counted.

They gave him a blood transfusion to get him more red blood cells for the hemoglobin to carry more oxygen. This helped, but they would have to give him a few more over the next day.

We had a pretty amazing experience as we were carrying in way too many bags from the car as we were stopped by someone in the NICU waiting room who asked if we were Rhett’s parents. She had found the blog and facebook page and thanked us for showing the reality of what to expect. The real reality that not many people have shared with the pictures immediately after surgery. Her little girl was getting to go home on Tuesday, she was very excited.

As we were talking to her the mother and father of the people we had talked to earlier that day stopped and chatted along with us and they were very thankful that we had taken the time to speak with them earlier and said that it had made their kids feel so much better. There are no thank you’s as sweet as knowing that you have truly impacted someone’s life. Their son is now in the CICU with us and he is doing very well.

When we woke up today (Tuesday) they noticed what looked like a lot of extra fluid and put him on diuretics to make him pee more to get the fluid out. He was awake a little and the saddest thing ever is when you can see him making a cry face but there is not sound because of the ventilator being down his throat.

They did an ultrasound and found there were pockets of blood around the chest tube, but not enough to warrant another tube to be put in. Instead they increased diuretics. Rhett woke up for a little bit and watched TV for a few minutes. For a small second I hope he was reminded of being home and found a little comfort.

Dr. Roten wanted to take a closer look so she came in and did an echo because she saw less flow to the left pulmonary artery. They gave him temporary paralysis medicine so they could get a better look. Once she was what she wanted she liked what she saw and told them to start him on heparin which is a blood thinner to eliminate any clotting that might be forming where the central line (where medine is administered) that goes into the Glenn. She said his left ventricle is stronger than a stand-alone right ventricle, but still not as strong as she’d like the left ventricle to be. Part of the surgery is combining the left and right ventricles to work as one.

Talon got to come visit and he wanted to see his brother and give him a kiss, he had to settle for barely rubbing his head, but of course with him being a kid that was enough for him and we was ready to go play games with Aunt Jadi.

Amanda and I went to dinner and when we came back they were changing the tape on the ventilator and Karen (our amazing nurse for last night and tonight) was taking great care of him and gave him a bit of a “bath”. I’m kind of a night owl so I always end up staying up late and hanging out with the nurses. I love talking to them about why they chose the career they did and what their ultimate goals are. Hearing their answers is just more assurance that we are right where we need to be. The love they have for what they do is inspiring and it’s so comforting knowing that Rhett is under their care. Nurses are the best.

The goals for tonight are to keep him stabilized and let more fluid drain out to reduce his swelling. We are hoping that the doctors will like what they see and can take him off of the ventilator. His oxygen percentage that they are giving him is down to 21% and he his holding steady in the 70’s on his saturation.

Overall things are going well. As with last time Rhett seems to be about a day behind schedule with things such as removing the central line and ventilator so we are hoping to see some major strides tomorrow and he can wake up a little bit and not have so much stuff around him and definitely not have a tube going through his nose and down his throat.

I’d say we were better prepared for this time and it’s been a very business trip like mentality from start to finish. We can’t express enough how great everyone has been. We wouldn’t want to be anywhere else. Love you all so much and appreciate all of the comments on Rhett’s page. We read every single one and they fill us with joy to see the number of people praying and thinking of our dear Rhett. Can’t wait to post new pictures tomorrow of him looking much better!

Today we went to the hospital for Rhett’s pre-op visit. It was a really different feeling than the last time we went in for one of these. Obviously we are still worried, but it just felt a lot different having already been through the first surgery and seeing that everything does end up okay. Rhett was there with us and was quite a little celebrity around there. It was so fun to see some of our old caregivers and hear them talk about how great Rhett looked. Some even went to find other people they had known to “work” on Rhett and brought them by to take a look. If you have to go through all of this mess, I’m glad we ended up at Cook’s. I think Amanda is mostly glad because they have cookie Wednesday’s and apparently they’re pretty good. Wait… Now i’m starting to wonder if she requested this day for the appointment just for the cookies…

We got there around 11:00 and neither of us had eaten anything all day so we swung into Chick Fil A and scarfed down some lunch. Rhett was in a great mood all day and he was smiling and talking up a storm. We went to the registration area and checked in and then we were escorted to an area where they checked all of Rhett’s vitals and they were very pleased. His O2 sats were at 85 which is great. They took his blood pressure and checked out some of his developmental things like holding his head up and things like that. He’s a little behind on the neck strength, but mostly because “tummy time” has been nearly impossible with his reflux issue (aka yack attacks). But they were still pleased and were very noticing of how aware he was. He was just looking around as people started talking and moving around the room. It was definitely a proud dad moment.

He’s been through so much already and we’ve really only hit the tip of the iceberg, but I know he’s going to excel all throughout life thanks to all of the great people around him. He’s 23.6″ long now and weighs 10lbs and 2 ounces, so he’s officially passed my birth weight of 10lbs 1 ounce! It only took him 3 months. His head measured a little under 16 inches which is totally normal for his age. They listened to his heart and could hear his unmistakable murmur (also a good thing).

Surgery has been schedule for 8:00 am on Monday 1/18 and we have to arrive around 7:00am. They told us we could feed him until 1:00am and give him pedialyte until 5:00am. They’ll get started on prepping him for surgery and the actual surgery should start around 10:00am and last 3-4 hours. They’ll give us a call every hour for an update and whenever they make the first incision. They’ll be cutting into the same spot as they did last time so they said it could vary on how long it takes depending on the scar tissue fro the first surgery. They are going to give him bubblegum scented anesthesia so it doesn’t smell like “old beach balls” as they said. Odds are that he’ll need to be put on bypass as they did last time, so that won’t be any kind of surprise to us.

They said they typically will close his chest up following the surgery before he goes back to his room in the CICU. We are hoping that we’ll get to stay in our same room. We went on a “tour” of the CICU again and got to see some of our favorite people!

Being a veteran of this process is really nice because we know what to bring and what not to bring for our stay in the CICU, which should range from 7-14 days if everything goes smoothly. Obviously the sooner we can get out of there the better, but we’ve been pretty good at being patient. They will keep him there as long as he needs to stay. Except for that time they kept him Christmas Eve, haha we weren’t quite as patient that time.

So, you may be asking. What is the procedure? The procedure is called the bi-directional Glenn. “This operation usually is performed about six months after the Norwood to divert half of the blood to the lungs when circulation through the lungs no longer needs as much pressure from the ventricle. The shunt to the pulmonary arteries is disconnected and the right pulmonary artery is connected directly to the superior vena cava, the vein that brings deoxygenated blood from the upper part of the body to the heart. This sends half of the deoxygenated blood directly to the lungs without going through the ventricle.” (http://www.pediatricct.surgery.ucsf.edu/conditions–procedures/bi-directional-glenn-operation.aspx) You’re dang right I just inserted a cite in my blog post.

Something like what is pictured below.

We are ready to get our kiddo fixed up and this is the next step. Obviously it’s scary, but we know he is in great hands. We visited with Dr. Tam today about the surgery and he walked us through it step by step and made sure we understood as much as we could.

Rhett has been in such a good mood since they put the stent into the shunt and we are hoping that he’ll continue that after surgery. However, because of the increase blood flow they said we should expect him to experience headaches for a few weeks after the surgery. THAT we are not looking forward to, but this will be the last surgery until he is about three years old. At least we are HOPING this will be the last one. I know Amanda and I are both ready to just have a baby and not have to stress as much about the next surgery at least for a little while. The third surgery I think will be the hardest because he’ll be able to talk by then and we’ll have to actually listen to him be afraid and we’ll have to figure out some way to make him feel okay about everything, but for now…let’s just have a baby around. As with everything else we’ve all endured, we’ll cross that bridge when we get there.

So Amanda was checking Rhett’s O2 levels today and noticed they were a little low so she got in touch with the nurse who reached out to the doctor and instructed us to go ahead and bring him to the ER and they’d be aware that we were coming in so they could do some tests. They did a EKG, Echo, X Ray, and blood work and everything came back good, but they are going to keep him overnight to monitor his oxygen. Momma is feeling good about things and is going to stay overnight with him. I’ll add more to this post once we have some more to add to the story!

Things are finally starting to settle down and I’m really excited to finally get to post another blog entry, be forewarned that this one will be really long because we have THIRTY FOUR days to cover! Rhett has been home for 34 days and being home with him has changed everything for the better. I want to take a minute to thank everyone at Cooks. Thank you for being there for us every second of every day for 33 days. Going into this we knew it was going to be hard and we were absolutely right. To see your child go through what Rhett had to endure was the hardest thing either of us have ever done. The entire staff was so kind and supportive to our every need. They even managed to make some of it fun, but I think that goes along with how Amanda and I decided to live out our 33 days there. Situations are only as good as you make them and we chose to keep everything as light hearted as we could. That’s just the way Amanda and I are wired and in a place that can be so sad we chose to smile.

There were reminders every day as we walked the halls that it could always be worse. There are so many brave kids there that have their own path to walk that is very different from Rhett’s, but to see the smile on those kid’s faces was uplifting every day. Those kids just have a way of smiling through it all and it’s empowering. There was a little boy who I don’t know what was wrong with but he rode around on a little tricycle while, what I’m assuming were his mom and grandmother followed behind him with his little pole that held his medicines. Everybody knew him, so I’m assuming he had been there for quite a while. I watched that kid ride around for days. One day when Talon was up there to see Rhett we ran into this kid on the playground. He had a sword and a little gun and he was fighting bad guys. Talon and I played with him for about 15 minutes as they fought bad guys together and he let Talon use his gun. I’m assuming he and Talon are about the same age. But neither he nor Talon were bothered by what was wrong with him. They were just two little kids fighting bad guys. I hope I can continue to raise my boys to see past everything on the outside and just see the person in front of them for who they really are on the inside. It was a very special moment for me as a dad to watch them play. I hope his mom felt the same way.

The support we received by all of our nurses and doctors was second to none and they made it as easy as it could have possibly been. Many of them became friends as we shared those 33 days together and a few of them I know we’ll know for a long long time.

Dr. Tam was who did Rhett’s surgery. Talk about an amazing man… to do what he does is miraculous. To think about how small Rhett’s little heart is and to see this man’s hands I can’t even imagine what that feels like to open up a child’s chest and stitch vessels together. He was so genuine when he came by to check on us and it was without question that he loves each of these kids. He’s literally saved so many children. What a life.

Dr. Roten, who is Rhett’s cardiologist, has been our main contact since we first went to Cooks. At 22 weeks she diagnosed Rhett with Tricuspid Valve Atresia with Malposed Great Vessels and wouldn’t you know it, once he was out and they took a closer look… she nailed it. When she passed us in the halls or stopped by our room she always had a smile on her face. She talks a million miles a minute but has a way of communicating in a way that calmed us at every turn. We have chosen her as his official cardiologist, so we look forward to visiting her for years to come and as Rhett keeps busting through milestones.

Dr. Duncan is one of the CICU doctors… This guy is so cool. As time went on we had a running joke about me being a doctor on the side and he’d always check with me before making any decisions to make sure I “concur”. He really helped lighten the mood and you could tell his team responded well to it. Class act. After I went back to work he ran into Amanda and said “Where’s the doctor?” Amanda told him that I had to go back to work and he said “oh…the patients needed him?” Such an awesome dude!

Dr. Davis is another CICU doctor She made Amanda feel better every time she came in to talk to us. You could see how hard she thought about how she wanted to phrase things to make us feel the most comfortable. It definitely worked. She really pushed for mom and dad time as the best medicine and we really connected with that. She has such a kind and gentle demeanor. It’s so cool to see people with so much knowledge. I wish we had been her only patient because I could’ve listened to her talk for hours.

Seeing what all of those people do really makes you question your purpose in life because you get to watch them change lives on a daily basis. I know I’ll never be a doctor, but I hope by writing this blog it’ll help even just one person that may have to experience what we went through or even something similar. So again, thank you thank you thank you Cook Children’s for making us feel special.

We left the hospital around 11:00am on November 9th. Rhett had been in the hospital for 33 days so it was weird to take him outside. I mean the kid had never even seen the sun. We loaded him up in the car. We sat in the parking lot for a minute and shed a few tears, but we were elated to finally be going HOME. I’m sure you other parents can relate to taking your kid home from the first time. It’s pretty scary, not because I don’t trust my driving but you have to worry about all the other crazies on the road. Sure enough, as soon as we get out of the parking lot somebody ran a red light. I was being overly cautious so there wasn’t any chance that they’d hit us, but still! Then when we got on the highway it sure felt like everyone was going about 100 miles per hour! Slowly but surely we made our way home and were met with welcome home balloons! Our neighbors across the street were outside so we took Rhett over to say hi. She cried.

It’s been an amazing journey so far and it’s so weird to have so many people following along. It’s bigger than just our little family. It truly does take a village. All of the prayers and well wishes have been so comforting and every time someone new gets to see him for the first time who’s been following along it fills us with so much joy.

I think it was the day after we got home that Home Health came by to check on us. They are Cooks traveling warriors and they came to make sure we were getting settled in and to make sure we had all of the supplies we needed (believe me there are a lot). She came in and sat down and as we were talking she seemed pretty surprised as to how much we knew about what was going on with Rhett. She was asking if we knew about the feeding tube and how to change it. We told her step by step since we had been given instruction and practice at the hospital. We had all of the supplies we needed and so she was like… welp I guess we’re all good here. Boom! Momma and Daddy are on top of it!

Rhett has a pretty serious medicine schedule:

He started out on:

Enalapril – For his blood

Lasix – to help him pee

Aspririn – for blood

Bethanechol – for puking

Prevacid – for acid reflux

Since then we have stopped the Lasix and added in Miralax and gas medicine because wouldn’t you know it…he has trouble pooping.

On top of all that is making bottles! Talk about craziness… We had to mix breast milk with an acid reflux formula to help with Rhett’s little puke problem. Then you had to add that to just breast milk. You’d make like 6 bottles for the day because in the beginning Rhett was getting 60 milliliters every 3 hours. (For reference a normal shot glass is about 1 oz. which is equal to about 30 milliliters). Since being home we have moved up to 85ml every 4 hours which has made a huge difference in the amount of time Amanda has to do other things! Luckily with this new setup we can now make one bottle at a time. Feeding goes like this: Make the bottle, warm the bottle, try to feed Rhett for 20-30 minutes, measure what’s left when he’s done, add that to the feeding bag, calculate the rate/dose for the feeding tube, wait for it to finish, the clean out the bag. Basically by the time this is done it’s just about time to start all over again. Amanda was having to find time to pump in between and it was really wearing her down. We thought maybe we could try just doing the formula and since we switched to that, Rhett has been eating so much better. We are going to try to donate all of the milk Amanda has left to the hospital. He started out only drinking between 10-20ml per feeding and now he’s getting over 25ml pretty consistently. When we came home he weighed 7lbs 9 ounces and now he’s up to 9lbs 2 ounces as of today! Oh and he’s grown 3 inches since he was born.

Now that Amanda has stopped pumping she’s had a lot more time to find a little bit of sanity and with the feeding stretched out she’s finally able to get some sleep. With me being back at work I’m already getting very little sleep too just because of everything going on, so Amanda has found that it’s best for us both if she sleeps in the living room for now. After all of that time being apart while she stayed at the hospital we end up in the same boat (different boat?) once we’re home, but it’s for the better. I can’t wait for the day when we can just start sleeping in the same bed again.

Watching Talon with his little brother has been so fun! That kid loves Rhett and gets so excited when his eyes are open and he wants EVERYONE to come see. He always wants him to come lay in his bed with him before bed. The first thing he wants to do when he gets home is come see his “baby brudder”. I can’t wait to watch them grow up together. I think with Talon’s super high energy it’ll be a really good thing to help push Rhett along, considering that his heart condition is supposed to make him a little more chill (we’ll see about that). So much fun to come in the future!

This blog has taken me quite a while to write, but there’s just so much going on. We had our first Thanksgiving and it was pretty non-eventful, which was a good thing. We’ve been able to get a decent system in place to feed on the go. Being able to leave the house has been really nice for sure.

This past week has been really hard. Rhett has managed to come down with a cold and it seems to have coincided with a sinus infection for me and I think Talon has a cold too. It’s been a really stressful week with everyone except Amanda being sick. Rhett has been coughing and throwing up a ton, but it’s finally looking like he’s on his way to getting better. He was just starting to smile and all of that good stuff, but now he’s been in a pretty sad mood the last few days.

I think there is probably a whole lot more I could’ve written about on this one, but I really wanted to get a blog done so I can get back on a more normal blog schedule. I’m looking forward to writing about Rhett’s first Christmas.

If my math is correct, today Rhett has been home longer than he was in the hospital and that makes me happy. Glad to have you home, Rhett.

Jordan finally talked me into writing one of these. For anyone not following along on Facebook, I’m Amanda…the momma!

Have I told y’all how much I love Dr. Roten and all of the people that work with her!!!! They are amazing, so sweet and friendly. Rhett is gaining weight the way he should be, he currently weighs 8 lbs 5 oz!! Echo, EKG and chest X-ray all looked great. We are stopping his Lasix medicine this week (diuretic) and if all goes well another one next week. We go back for another check up December 14. Then they will schedule a heart cath for the end of January and his next surgery should be around the first or second week in February. For the heart cath, we will stay overnight and they’ll have to put him to sleep and put him on a ventilator to check pressures or something like that.

The Speech therapist came in and watched Rhett drink his bottle and said everything looked fine, but they want to schedule speech therapy to come out to our house once every other week or so to work with him on eating. They just think he has really bad reflux.

I have been trying to get Rhett to drink most of his bottles but when he doesn’t, I feel like I have failed. Dr. Roten helped me today by saying that I was doing a great job, but I was working too hard and making Rhett work too hard. It is ok to use his NG tube for feedings and we are just trying to make sure that he knows how to drink a bottle, but doesn’t need to drink every bottle. She told me to pick 3 or 4 out of his 6 feedings a day and continue trying the bottle and put the other feedings completely through his tube (she suggested the ones in the middle of the night to put through the tube so I can get some sleep). Drinking a bottle for Rhett is like running a marathon every time. She said after his second surgery he will start eating better. Right now it doesn’t matter how he gets his feedings as long as he’s getting them so he doesn’t get dehydrated, but it’s important for him to keep trying the bottle so he knows to eat

Today was a good day and I was able to feed Rhett through his tube while we were out, which is something I haven’t tried yet. If you know Jordan and I you know we are always on the go. I know we can’t go as many places as before but it’s nice to know that our Thanksgiving travels won’t stress me out much.

And look who finally got to go to the Camelot Court for lunch!

Jordan told me to say that a big long blog post is coming soon describing leaving Cooks and our first couple weeks at home.

Today we were pretty surprised to find out that they were going to remove Rhett’s feeding tube. They are going to try to get him to keep his bottles down and get enough food that way. Its very weird to see him without anything attached or going into his face. It’s weird for that to be weird. The plan is that as long as he doesn’t have four consecutive feeds of 20ml or less that he should be able to stay off of the feeding tube!

He’s really done so good. There’s a lot to happen over the next few years, but for right now it’s really nice to just have him doing well. It’s funny because we rarely even look at the monitor that tells us his heart rate and oxygenation. Since he’s been doing so great, we aren’t even really concerned about that.

Everyone here has been so great at communicating and making sure we know exactly what is going on. It’s been a little harder for me to keep up since only Amanda is staying overnight here and I’ve been staying at home. I’ve found it very hard to stay at home alone, but I think I’d sleep even less if I was trying to stay here in Rhett’s room. I am so ready for all of us to be at home living together!

Monday I’ll be going back to work, which I’m not really looking forward to. I don’t mind my job, but it’s just going to be hard while Amanda and Rhett are up here and I’m at work. I know it’s going to be a difficult time while he’s here and I’m having to get up at 5:30 in the morning to get to work, go to hospital after work, and try to get a good nights sleep so I’ll be rested for work. I’m ready to see everyone up there though!

I wanted to say a huge thank you to Ashley Ylda for her Younique party that raised money to donate to help Rhett as well as Holly at Walnut Creek Elementary for their fundraiser where the kids got to wear pajamas to work if they donated $1. We received a few really nice hand drawn cards and notes from the kids. Thank you!

This week has gone by fast, but I think it’s because Rhett has been doing great and it’s just a matter of time before we’ll get to go home. We’re obviously excited to go home, but it’s also terrifying because they won’t be here to back us up if something goes wrong. Luckily we are only 30 minutes away if there’s an emergency. One of the families we had talked to was from Abilene and they had to get a Care Flight membership so their kid could get here in 30 minutes if something went wrong. Their kid is doing great too it seems. These people really know what they are doing!

We had to take an infant CPR class and while I think I could administer CPR if I had to… I really really really don’t want to.

We’re posting lots of pictures and stuff on Facebook for people who want to follow along! Right now we are just taking it a day at a time and waiting until we get home!

Thank you all so much for your support, love, and prayers. It means more than you know and we love reading all of the comments on the Team Rhett page. You all are so awesome and we can’t wait for a lot of you to meet this little guy!!

Hooray Hooray Hooray! Rhett is out of the CICU and back into the NICU which is a huge step towards him being ready for us to take home. It’s been a crazy 16 days since Rhett was born but we’re finally getting to what will be the new normal for the next couple to a few weeks. It would be a lot easier if there was a real timeline of when we’d get to take him home, but we are just trying to take it a day at a time. I’ve been staying at home because the NICU doesn’t really lend itself to two people sleeping here. Being at home in an empty house makes me really ready for all four of us to be there together again. Rhett’s and Talon’s rooms are largely untouched since went to the hospital to deliver Rhett. I’m going to regret saying this later, but I’m ready for a mess.

The night before we moved to the NICU again our nurse was Maddie and I already cleared this story with her because it may have been the hardest we’ve laughed since we got to the hospital. She was taking his temperature with a rectal thermometer so I guessed 36.8 and Amanda guessed 36.6 (celsius). Nurse Maddie said she might as well get in on this action so she took the middle and went with 36.7. The wait for the thing to register is a lot longer than one would hope so as we were sitting there waiting for the result, Nurse Maddie made a joke about poop coming out along with the thermometer. Well sure enough, beep beep, 36.7, pull, fart, poop. She laughed and said, “Looks like I’m the big winner!” It was hilarious, we were laughing so hard!

Moving to the NICU was quite a little event. They told us the night before that they thought we’d be moving the next day, but they’d said that before so we didn’t want to get out hopes up. Once they told us for sure that we were moving I thought it was a little strange that they brought in a plastic wagon to transport him. After all of the fancy shmancy carrier things that he’s been it I was pretty surprised to see this toy wagon with blankets in it. I jokingly commented to the nurse that I wasn’t comfortable with it. Come to find out, Amanda had to talk her out of taking one of the giant beds over because she thought I was seriously not cool with it.

So here we are now in the NICU again. It feels like forever since those first two days of Rhett’s life when he was in the NICU. We ended up moving into the room right next to where we were before. This room feels a lot bigger, but it’s actually smaller. I think the weight of the situation might have made the room next door feel much smaller than it was. It feels like the hard part is all behind us for now. Obviously with two more surgeries looming in the future we have much left ahead, but for right now we’ve got a fairly healthy little boy who is working on eating and keeping it down. That’s his big battle at this point. He’s moving on up though. They took him out of his spaceship bed and put him into a crib like bed which isn’t nearly as cool, but that means he’s doing well and that there’s someone else that needs it more.

Talon finally got to hold his little brother, he was very excited but I guess his attention span is short because he was quickly content.

He’s finally getting to wear clothes! Momma is definitely excited about that! The plan for right now is to start feeding 55ml of milk over two hours and then not feeding for an hour after that to try to get his stomach used to spaced out feeding rather than being continuously fed through his feeding tube. Baby steps and one day at a time is our plan but Rhett is moving right along!

Watching Rhett overcome so many things over his short 8 days of life has been so amazing. It’s hard to say what I expected from this experience, but getting to watch Rhett tackle challenge after challenge, and to see my wife be so strong, and the support and love from family and friends and people that don’t even know me, and Talon interact with his little brother has turned what I thought would be weeks of sadness turn into days full of smiling and happy tears. Also, yes I know that was like the worst run on sentence in the history of sentences.

I can’t express enough how thankful Amanda and I are for all of the messages of support that we have received. It’s been overwhelming in the best kind of way. The CICU staff has been so great and supportive in making us feel good ever single day. The nurses and doctors are nothing short of amazing and we’ve even had the chance to meet some of the other parents. Getting to share some of our story with them and offering them encouragement and them being able to do the same for us as we all are going through this separately, but together. With that being said, I’d like to ask that you also say some prayers for the families of Daxton, Hazel, and Leon as they are all going through their own struggles.

I wanted to thank Christi for her entry about Rhett on her website thewaterwife.com

Amanda and I got to celebrate our one year anniversary at Cook’s on the 11th. Hard to believe it’s been a whole year, but what a year it was. She is the perfect mother and wife and she has managed to smile all the way through this. We have managed to have fun throughout our stay at the CICU INN and when I go home to get good sleep, I still miss her. Thanks for an amazing year, my dear!

So much has happened in the few days since my last blog post. This week has felt like a month! Rhett has been closed up, the breathing tube has been removed, his swelling is all but gone, he’s pee’d and pooped on his own, I was able to get him to take a bottle, he’s had countless drainage tubes removed, and momma is now getting to hold him every day.

Holding him… It’s quite an event. Don’t take for granted the ability to just pick up your baby when they are crying. Holding Rhett for us means that we need at least two nurses to come over, lift Rhett and transfer about a million wires as well as him over to Amanda who has to sit right next to Rhett’s bed and pretty much let him lay on a pillow in her lap still attached to all of his machines. There are so many times when he’s crying that we wish we could just pick him up and hold him. We try to stay close by and lean into his bed to be with him, but we both long to just grab him and pick him up. I’m trying to upload a video to youtube but apparently my internet wants to upload super slow. Once it’s finally ready I’ll include it here if you’d like to watch the video of Amanda holding Rhett for the first time after surgery.

I’m hoping that some parents who are about to go through what Amanda and I have endured over this past week somehow manage to find this page and find some comfort. I saw a mom and dad in the waiting room yesterday who looked to be about our age and it was just the two of them. It was about 9:30 and Dr. Tam had just finished their child’s surgery. Although it was only a short time ago that Amanda and I took that walk in to see our Rhett for the first time, but obviously the emotions I felt will never be forgotten. I reached out to them and told them that they are about to experience the worst part, but I assured them that things do get better. There will be giant leaps forward and baby steps back all throughout their stay in the CICU, but you just have to take it a half day at a time. Take the good with the bad, and KNOW that things are going to get better and the little baby that you saw the first day will return and the only difference will be the battle scar left on their chest and the amount your love has grown when you thought your heart couldn’t be more full.

So for anyone who hasn’t quite started their journey yet. It will be hard, you will be tired, you will cry, you will smile, you will want to break, you will feel on top of the world, but keep pushing forward. IT GET’S BETTER and the best thing you can do is just be there for your baby. When they are covered from head to toe in wires and sensors and bandages, find an clear patch of skin on their forehead and give them a kiss. Lean on your family for support and if you don’t have much support you can message me and I’ll be there for you. I wish there was a big brother/big sister type program at the hospital where parents who have been through this and parents who are about to go through this can be linked together for guidance. I wish I had someone who could’ve given me the harsh details of that first look at Rhett when he was swollen beyond belief and hooked up to a million machines. The doctors are amazing and science can achieve impossible things. Have faith in the hands that guide the hands of all of those who are there to make your kiddo better. Slowly but surely, it most assuredly gets better.